When a woman is diagnosed with breast cancer it is not only she who embarks on an unexpected and unwelcome journey – her partner will also inevitably experience their own challenging cancer journey.
In an effort to address the vast gaps in information, resources and support which exist for partners of women living with breast cancer, the National Breast Cancer Foundation (NBCF) in Australia have released a landmark report, entitled “So I bit down on the leather…”: ending the silence for men whose partners have breast cancer.
The report reviews existing research and uses cases studies to focus on the experience of partners. It acknowledges that partners, whether male or female, are caught up in the turmoil of a diagnosis and that there is little information designed to specifically address their needs.
The main objectives of the report were not only to identify and draw attention to these needs in an effort to stimulate research in these areas, but also to encourage partner participation in research. In preparing this report the authors developed a simple online survey about the partner experience that they distributed through survivor volunteers, asking them to pass it on to partners.
More than 400 people were sent the survey but only six male partners responded, highlighting the difficulties noted in previous studies of getting partners to engage in research. To help overcome this, the authors also conducted in-depth interviews with a limited number of partners.
The report addresses several issues including lack of information, inclusion and support, changing relationships, concerns about employment, sexual intimacy and body image. While only a small number of men are represented in the report, their stories and voices do personalise the issues addressed and illustrate the very real distress and uncertainty that many of them felt when their partners were diagnosed with breast cancer.
For example, this comment emphasises the gap in resources for partners: “It would have been good to have someone tell me what I was going to expect, or how I was to manage it. I am the sort of person that if you just point me to a resource, I’ll use it, but there was nothing.”
In the telling of personal stories there is also advice for others who find themselves in this situation. One partner explains: “We entered the whole thing as a partnership and we got through it as a partnership. That’s what she wanted and needed, a partner and good communicator. When you are seeing all these practitioners and having to make decisions … there’s a lot to take in. It’s a two-person task just to handle the information given …”
The report concludes with a list of eight recommendations for research action and says that engaging partners in research from planning through to implementation is key to identifying and providing the support they need.
Read the full report here.
Source: Renouf, C., & Henshall, D. S. (2013). "So I bit down on the leather...": ending the silence for men whose partners have breast cancer. Sydney: National Breast Cancer Foundation (Australia).